In patient centred care, shared decision making is a central feature and widely referred to as a norm for patient centred medical consultation. However, it is far from clear how to distinguish SDM from standard models and ideals for medical decision making, such as paternalism and patient choice, and e.g., whether paternalism and patient choice can involve a greater degree of the sort of sharing involved in SDM and still retain their essential features. In the article, different versions of SDM (...) are explored, versions compatible with paternalism and patient choice as well as versions that go beyond these traditional decision making models. Whenever SDM is discussed or introduced it is of importance to be clear over which of these different versions are being pursued, since they connect to basic values and ideals of health care in different ways. It is further argued that we have reason to pursue versions of SDM involving, what is called, a high level dynamics in medical decision-making. This leaves four alternative models to choose between depending on how we balance between the values of patient best interest, patient autonomy, and an effective decision in terms of patient compliance or adherence: Shared Rational Deliberative Patient Choice, Shared Rational Deliberative Paternalism, Shared Rational Deliberative Joint Decision, and Professionally Driven Best Interest Compromise. In relation to these models it is argued that we ideally should use the Shared Rational Deliberative Joint Decision model. However, when the patient and professional fail to reach consensus we will have reason to pursue the Professionally Driven Best Interest Compromise model since this will best harmonise between the different values at stake: patient best interest, patient autonomy, patient adherence and a continued care relationship. (shrink)

The power of new medical technologies, the cultural authority of physicians, and the gendered power dynamics of many patient-physician relationships can all inhibit women's reproductive freedom. Often these factors interfere with women's ability to trust themselves to choose and act in ways that are consistent with their own goals and values. In this book Carolyn McLeod introduces to the reproductive ethics literature the idea that in reproductive health care women's self-trust can be undermined in ways that threaten their autonomy. Understanding (...) the importance of self-trust for autonomy, McLeod argues, is crucial to understanding the limits on women's reproductive freedom. -/- McLeod brings feminist insights in philosophical moral psychology to reproductive ethics, and to health-care ethics more broadly. She identifies the social environments in which self-trust is formed and encouraged. She also shows how women's experiences of reproductive health care can enrich our understanding of self-trust and autonomy as philosophical concepts. The book's theoretical components are grounded in women's concrete experiences. The cases discussed, which involve miscarriage, infertility treatment, and prenatal diagnosis, show that what many women feel toward themselves in reproductive contexts is analogous to what we feel toward others when we trust or distrust them. -/- McLeod also discusses what health-care providers can do to minimize the barriers to women's self-trust in reproductive health care, and why they have a duty to do so as part of their larger duty to respect patient autonomy. (shrink)

While promoting population health has been the classic goal of public health practice and policy, in recent decades, new objectives in terms of autonomy and equality have been introduced. These different goals are analysed, and it is demonstrated how they may conflict severly in several ways, leaving serious unclarities both regarding the normative issue of what goal should be pursued by public health, what that implies in practical terms, and the descriptive issue of what goal that actually is pursued in (...) different contexts. A basic conflict of perspective is handled by integrating the ideas of public health striving for health-related autonomy and equality, resulting in a prioritarian oriented population approach to health-related autonomy. This integrated goal is demonstrated to constrain itself in several ways attractive from the point of view of the classic goal, but several serious problems remain. For this reason, a model where all of the three goals are integrated into one coherent structure where they can be assigned varying degrees of importance relative to the level of population health is described. It is argued that this model avoids the problems set out earlier, and is actually normatively preferable to the classic goal alone. It is furthermore argued that the model may be employed as a useful tool for descriptive ethics, as well as a vehicle for international harmonisation of public health policies. A number of practical implications regarding, e.g., the importance of respecting autonomy and the allocation of public health resources are noted, as are a battery of questions for further research. (shrink)

Contributions to this study are drawn both from health professionals engaged in genetic counselling and from observers and critics with backgrounds in law, philosophy, biology, and the social sciences. This diversity will enable health professonals to examine their activities with a fresh eye, and will help the observer-critic to understand the ethical problems that arise in genetic counselling practice, rather than in imaginary encounters. Most examinations of the ethical issues raised by genetics are concerned in a broad sense with the (...) application of new technology to human reproduction. This volume focuses on genetic counselling and screening as such, providing valuable insights for the health professional, social scientist, philosopher, lawyer, and bioethicist. (shrink)

In central definitions of shared decision-making within medical consultations we find the concept of negotiation used to describe the interaction between patient and professional in case of conflict. It has been noted that the concept of negotiation is far from clear in this context and in other contexts it is used both in terms of rational deliberation and bargaining. The articles explores whether rational deliberation or bargaining accurately describes the negotiation in shared decision-making and finds that it fails to do (...) so on both descriptive and normative grounds. At the end some notes on further analysis is given and it is suggested that the interaction is more accurately described in terms of an internal balancing of values like patient best interest, patient autonomy and patient adherence by the professional that is accepted by the patient. (shrink)

Advocates of “concordance” describe it as a new model of shared decision-making between physicians and patients based on a partnership of equals. “Concordance” is meant to make obsolete the notion of “compliance,” in which patients are seen as, ideally, following doctors’ orders. This essay offers a critical view of concordance, arguing that the literature itself on concordance, including materials at the web site of Medicines Partnership, the implementation arm in Great Britain of the concordance model, is full of contradiction; concordance, (...) in fact, harbors an ideology of compliance. The essay suggests that an improvement in patient medication use will more likely come from a frank consideration of the relation of compliance issues and commercial ones, and that a key question across domains is, “how are patients/health agents/consumers persuaded to acquire certain drugs and take them as directed?”. (shrink)

ABSTRACT Accurate self‐administration of antiretroviral medication therapy for HIV/aids is a significant clinical and ethical concern because of its implications for individual morbidity and mortality, the health of the public, and escalating healthcare costs. However, the traditional construction of patient medication adherence is oversimplified, myopic, and ethically problematic. Adherence relies on existing social power structures and western normative assumptions about the proper roles of patients and providers, and principally focuses on patient variables, obscuring the powerful socioeconomic and institutional influences on (...) behaviour. Some professionals advocate for alternate approaches to adherence, but many of the available alternatives remain conceptually underdeveloped. Using HIV/aids as an exemplar, this paper presents medication practice as a theoretical reconstruction and explicates its conceptual and ethical evolution. We first propose that one of these alternatives, medication practice, broadens the understanding of individuals’ medication‐taking behaviour, speaks to the inherent power inequities in the patient‐provider interaction, and addresses the ethical shortcomings in the traditional construal. We then integrate medication practice with feminist thought, further validating individuals’ situated knowledge, choices, and multiple roles; more fully recognizing the individual as a multidimensional, autonomous human being; and reducing notions of obedience and deference to authority. Blame is thus extricated from the healthcare relationship, reshaping the traditionally adversarial components of the interaction, and eliminating the view of adherence as a patient problem in need of patient‐centred interventions. (shrink)

In recent years the formerly quite strong interest in patient compliance has been questioned for being too paternalistic and oriented towards overly narrow biomedical goals as the basis for treatment recommendations. In line with this there has been a shift towards using the notion of adherence to signal an increased weight for patients’ preferences and autonomy in decision making around treatments. This ‘adherence-paradigm’ thus encompasses shared decision-making as an ideal and patient perspective and autonomy as guiding goals of care. What (...) this implies in terms of the importance that we have reason to attach to (non-)adherence and how has, however, not been explained. In this article, we explore the relationship between different forms of shared decision-making, patient autonomy and adherence. Distinguishing between dynamically and statically framed adherence we show how the version of shared decision-making advocated will have consequences for whether one should be interested in a dynamically or statically framed adherence and in what way patient adherence should be assessed. In contrast to the former compliance paradigm (where non-compliance was necessarily seen as a problem), using observations about (non-)adherence to assess the success of health care decision making and professional-patient interaction turns out to be a much less straightforward matter. (shrink)

The medical decision-making process is currently in flux. Decisions are no longer made entirely at the physician's discretion: patients are becoming more and more involved in the process. There is a great deal of discussion about the ideal of ‘informed consent’, that is that diagnostic and therapeutic decisions should be made based on an interaction between physician and patient. This means that patients are informed about the advantages and disadvantages of a treatment as well as alternatives to the treatment; then, (...) based on this information they can decide whether or not they want to undergo the treatment. However, recent studies show that the realisation of the ideal of ‘shared decision-making’ faces a number of difficulties related to the fact that patients are not provided with complete and accurate information. Using the example of breast cancer screening, this article examines the question of whether, in light of these difficulties, the ideal of informed decision-making is only an illusion or whether concrete steps can be taken towards the realisation of this ideal. (shrink)

Background: There is a shortage of reports on what potential recipients of implantable cardioverter–defibrillators need to be informed about and what role they can and want to play in the decision-making process when it comes to whether or not to implant an ICD.Aims: To explore how patients with heart failure and previous episodes of malignant arrhythmia experience and view their role in the decision to initiate ICD treatment.Patients and methods: A qualitative content analysis of semistructured interviews was used. The study (...) population consisted of 31 outpatients with moderate heart failure at the time of their first ICD implantation.Setting: The study was performed at Sahlgrenska University Hospital, Göteborg, Sweden.Results: None of the respondents had discussed the alternative option of receiving treatment with anti-arrhythmic drugs, the estimated risk of a fatal arrhythmia, or the expected time of survival from heart failure in itself. Even so, very little criticism was directed at the lack of information or the lack of participation in the decision-making process. The respondents felt that they had to rely on the doctors’ recommendation when it comes to such a complex and important decision. None of them regretted implantation of the ICD.Conclusions: The respondents were confronted by a matter of fact. They needed an ICD and were given an offer they could not refuse, simply because life was precious to them. Being able to give well-informed consent seemed to be a matter of less importance for them. (shrink)

Objective: Contemporary ethical accounts of the patient-provider relationship emphasise respect for patient autonomy and shared decision making. We sought to examine the relative influence of involvement in decisions, confidence and trust in providers, and treatment with respect and dignity on patients’ evaluations of their hospital care.Design: Cross-sectional survey.Setting: Fifty one hospitals in Massachusetts.Participants: Stratified random sample of adults discharged from a medical, surgical, or maternity hospitalisation between January and March, 1998. Twelve thousand six hundred and eighty survey recipients responded.Main outcome (...) measure: Respondent would definitely be willing to recommend the hospital to family and friends.Results: In a logistic regression analysis, treatment with respect and dignity 3.4, 99% confidence interval 2.8 to 4.2) and confidence and trust in providers were more strongly associated with willingness to recommend than having enough involvement in decisions . Courtesy and availability of staff , continuity and transition , attention to physical comfort , and coordination of care were also significantly associated with willingness to recommend.Conclusions: Confidence and trust in providers and treatment with respect and dignity are more closely associated with patients’ overall evaluations of their hospitals than adequate involvement in decisions. These findings challenge a narrow emphasis on patient autonomy and shared decision making, while arguing for increased attention to trust and respect in ethical models of health care. (shrink)

Objectives: Evidence based patient choice seems based on a strong liberal individualist interpretation of patient autonomy; however, not all patients are in favour of such an interpretation. The authors wished to assess whether ideals of autonomy in clinical practice are more in accordance with alternative concepts of autonomy from the ethics literature. This paper describes the development of a questionnaire to assess such concepts of autonomy.Methods: A questionnaire, based on six moral concepts from the ethics literature, was sent to aneurysm (...) patients and their surgeons. The structure of the questionnaire was assessed by factor analysis, and item reduction was based on reliability.Results: Ninety six patients and 58 surgeons participated. The questionnaire consisted of four scales. Two of the scales reflected the paternalistic and consumerist poles of the liberal individualist model, one scale reflected concepts of Socratic autonomy and of procedural independence, and the fourth scale reflected ideals of risk disclosure.Discussion: The Ideal Patient Autonomy Scale is a 14 item normative instrument. It is clearly distinct from the generally used psychological preference questionnaires that assess preferences for physician-patient roles. (shrink)

In patient-centred care, shared decision-making is advocated as the preferred form of medical decision-making. Shared decision-making is supported with reference to patient autonomy without abandoning the patient or giving up the possibility of influencing how the patient is benefited. It is, however, not transparent how shared decision-making is related to autonomy and, in effect, what support autonomy can give shared decision-making. In the article, different forms of shared decision-making are analysed in relation to five different aspects of autonomy: (1) self-realisation; (...) (2) preference satisfaction; (3) self-direction; (4) binary autonomy of the person; (5) gradual autonomy of the person. It is argued that both individually and jointly these aspects will support the models called shared rational deliberative patient choice and joint decision as the preferred versions from an autonomy perspective. Acknowledging that both of these models may fail, the professionally driven best interest compromise model is held out as a satisfactory second-best choice. (shrink)

ABSTRACT Accurate self‐administration of antiretroviral medication therapy for HIV/aids is a significant clinical and ethical concern because of its implications for individual morbidity and mortality, the health of the public, and escalating healthcare costs. However, the traditional construction of patient medication adherence is oversimplified, myopic, and ethically problematic. Adherence relies on existing social power structures and western normative assumptions about the proper roles of patients and providers, and principally focuses on patient variables, obscuring the powerful socioeconomic and institutional influences on (...) behaviour. Some professionals advocate for alternate approaches to adherence, but many of the available alternatives remain conceptually underdeveloped. Using HIV/aids as an exemplar, this paper presents medication practice as a theoretical reconstruction and explicates its conceptual and ethical evolution. We first propose that one of these alternatives, medication practice, broadens the understanding of individuals’ medication‐taking behaviour, speaks to the inherent power inequities in the patient‐provider interaction, and addresses the ethical shortcomings in the traditional construal. We then integrate medication practice with feminist thought, further validating individuals’ situated knowledge, choices, and multiple roles; more fully recognizing the individual as a multidimensional, autonomous human being; and reducing notions of obedience and deference to authority. Blame is thus extricated from the healthcare relationship, reshaping the traditionally adversarial components of the interaction, and eliminating the view of adherence as a patient problem in need of patient‐centred interventions. (shrink)

Currently, the common theoretical models of "preferred" decision-making relationships do not correspond well with clinical experience. This interview study of congestive heart failure (CHF) patients documents the variety of patient preferences for decision-making, and the necessity for attention to family involvement. In addition, these findings illustrate the confusion as to the designation of surrogate decision-makers and physicians in charge. We conclude that no single model of physician-patient decision-making should be preferred, and that physicians should first ask patients how they want (...) medical information and decision-making to be handled. (shrink)